Pediatrician for a child with chronic health issues

amother

Sun, Jan 03 2021, 12:16 am

amother [ Cerulean ] wrote:

I’m sorry I misunderstood. You said 2 hours away, I assumed 2 hour drive not flight.

Do you live near a major children’s hospital? I’d start with pediatrician affiliated with the hospitals as they will have experience dealing with other (differently) medically fragile and complex kids.

It is a drive, but meant it in a way of stop & drop everything we’re doing, arrange long distance transportation & find someone to babysit other kids for hours...
Closest children hospital is about 45 minutes away. I guess I can look into that but if I’m going to be driving 45 minutes maybe I should just keep it all in network... Can't Believe It

Just One

Sun, Jan 03 2021, 12:16 am

Where in NY are you? We were dealing with a similar situation when my son with a cardiac issue was first released from the hospital. I was happy enough with my pediatrician, who though not the biggest expert on his condition, was humble and caring enough to reach out to his cardiologist whenever anything more complicated than the typical childhood bruises and sniffles came up.
If you're in BP/Flatbush Dr Ziskind in Dr Diamonds office is supposed to be great. I didn't personally use him, but he was a great care coordinator for a family member who has a child with very complex health issues

amother

Cerulean

Sun, Jan 03 2021, 12:21 am

amother [ OP ] wrote:

I personally think if you’d go to their ED you should stick with their pediatrician. Keep it all centralized. And if the complex Care program you were referring to is elsewhere, it’s worth asking about theirs. If can be an invaluable resource. Criteria is strict and availability tight but worth inquiring about

amother

Sun, Jan 03 2021, 12:29 am

amother [ Cerulean ] wrote:

it is in a different hospital that we originally started out with. This hospital (we see different specialists in and most of our current care is through this network) does not have a CC program. But really, how feasible is it to have a pediatrician 2 hours away?
Do you know which NYC hospitals have these programs?

amother

Cerulean

Sun, Jan 03 2021, 12:33 am

amother [ OP ] wrote:

Def NYP but I assume the other major children’s hospitals (CHAM and NYU) do too

amother

Sun, Jan 03 2021, 11:15 am

amother [ Cerulean ] wrote:

But they’re not equipped to do well visits, vaccines, monitor development and fill out (I’m assuming) lots of school forms, DME prescription, insurance snafus etc. I’d ask this specialist since you regard her so highly to recommend a pediatrician in her system for you.

Btw, just want to come back to this again. Each of these things are mostly done by our specialists.
Vaccines- often done at ID or heme/onc or they told us which we can do and got it done by local pediatrician or CCP
Well check- at least monthly at h/o, plus whenever we see all other specialties.
DME stuff- pulm or GI.
When I couldn’t get through to pulm and asked pediatrician (again, the one specializing in kids with chronic needs) for an increase she said didn’t the respiratory people prescribe that? Go back to them. Gee, thanks.

We’ve got the best insurance letters written by the specialists, not by our pediatrician who deals with this all the time...

Anyway, point is not to have h/o or ID be primary. The question is more so if we see someone local to what extent do they collaborate and what makes a pediatrician be more forthcoming to work together to follow orders and also have some knowledge on how to go about things if specialists are not available then.
I’m going to try out a new doc this week, hope it will be a good shidduch...